When I published my post earlier about the ways we keep our pain silent, one of the patient advocates I deeply admire responded to my post. And what she said reflects a truth I often hear in the office. It still hurt to hear.

Women of Teal ‏@womenoftealThere are those that think we are complaining because you can’t “see” pain and other side effects but still disabling 4 us.

When did our attitude shift so that telling the truth about painful experiences or pain itself is identified as complaining? How did the “positive attitude” become a mandate rather than a goal? Listen, I’m a psychologist. I am a brain science geek. I truly believe that finding and fully experiencing the moments of joy and comfort in our lives is important. I use gratitude journals and happy moments practice as therapy homework assignments. I am passionate about the possibility of people moving toward more brain and body health. I understand that sometimes we have to challenge ourselves to move and reach and risk–even in the face of pain.

But here’s the thing. While I believe that pain does not have to be the complete definition of our existence, I understand that pain is real. I understand that fatigue, depression, pain, and anxiety are not going to be banished by our will alone.

The expectation that people who are coping with chronic illness, of any stripe, should never talk about the hard parts of their life experience is just absurd. Chronic illness is a constant companion. If you are fortunate, your chronic illness may be well managed by lifestyle choices and medication. But even “well-managed” illnesses take a toll. So many of my clients are choosing between the progression of their illness or taking a medication that has significant negative side effects. And when you live with chronic illness, you can never be certain that you won’t have a “crash” day.

It does not support health to dismiss people’s experiences as “complaining.” It does not support health to diminish someone’s truth because it does not match your expectation of how things go. It does not support health to buy into healthy privilege and the assertion that health is a manifestation of virtue.

It is expectations like this, that people should suffer in silence in order to deserve our support, that further the many layers of stigma surrounding physical and mental illness.

So let’s talk about how we can create moments–in health care and in society–where we truly listen to the experiences people are having. When we trust that they are describing the truth of their experience. And where we choose to offer compassion instead of judgment.

I think it is safe to say that my most popular posts since I began writing were the series I put together about what health stigma and healthy privilege are–and how seriously they affect us. I still stand by the ideas I shared in that series. Recently, as I have talked to clients, and I have participated in conversations online, I have realized that there is an issue that is directly linked to healthy privilege and health stigma that I didn’t explicitly address in my earlier posts. And it is this:

Having the privilege of health is not reflective of your virtue as a person or the value of your choices.

Let me be clear about this. I certainly believe that we have the ability to make healthy choices. We can strive for good food, rest, and movement. We can choose relationships that support us instead of relationships that tear us down. We can seek appropriate physical and mental health care to be sure that we stay as healthy as possible. We can make healthy choices. But those healthy choices do not guarantee our health.

We live in a culture that is very focused on individual control. We want to believe that good choices lead to good outcomes. And that means that if you struggle with health challenges–emotional or physical–you must not have made good health choices. Right?

WRONG.

This unspoken idea that good health is a reward for healthy choices is one of the pillars that supports the ongoing stigma of health challenges. The belief that good health is the result of good choices is a reason that so many people feel blamed or shamed for the illnesses they live through.

The truth is, that no one is guaranteed good health. Athletes in peak condition die of undetected heart conditions. People who have eaten perfectly their whole lives get cancer. People with great mental attitudes struggle with depression or anxiety. People with strong work ethics get multiple sclerosis or rheumatoid arthritis. Making healthy choices certainly improves our odds of experiencing health in life. But we don’t get a guarantee.

We would like a guarantee. We want to feel that good is rewarded. We want to believe that our choices ultimately control our experiences. But we live in a world where our genes, our environment, and sometimes, just our spin of the luck wheel determine our experience. And I think that our society sometimes takes that wish for a guarantee and uses it to shame and blame people who are facing health challenges. Because if other people can make healthy choices and still face illness, then we might be at risk for illness too. Because we want to deny the fact that sometimes good health is good luck.

Since this lightbulb went on, I have seen this attitude in so many places. And I think that we need to call it out. Health is a goal. It is a gift. But health is not a virtue.

Let’s have that conversation.

Oh–and just to have some outside perspective, check out this long list of “Virtues of Moral Personhood (note that health isn’t on there anywhere):”

This post was originally shared at the website for the #MedPsych tweetchat.

I started to touch on this point last week in my post about honoring vulnerability. And we’ve had some great discussions about the issue of vulnerability and health over the past few weeks in #MedPsych chat (check out the transcripts here). And there have been comments made during this entire year of the #MedPsych chat that have led to this topic.

Being healthy (in body and mind) doesn’t equal being superhuman.

I think that if I said that to the average person on the street, they would agree with me. But, the truth is, we kind of expect superhuman–from ourselves, from our patients/clients, and from our healthcare providers.

We expect that we will never fall ill.

We expect that we will perfectly manage our chronic health conditions.

We expect that we will always communicate our needs well.

We expect that we will intuitively choose healthy habits.

We expect that we will never need to restart our healthy choices.

We expect that clients will keep appointments, even when their lives are in chaos.

We expect that patients can make behavior changes, even without education and support.

We expect that clients and patients can communicate their needs on our timeline.

We expect that our healthcare providers will be completely up to date on current research.

We expect that our healthcare providers will start all appointments on time.

We expect that our healthcare providers will take as much time with us as we need.

We expect that our healthcare providers will be able to connect empathetically with us as fellow human beings.

We expect that our healthcare providers will have good enough boundaries not to burden us with their struggles.

And that’s just a tiny sampling of the expectations that we have–for ourselves and for our healthcare providers–when it comes to health. Laid out like that, it becomes pretty easy to understand why we often feel blamed and judged in healthcare, on all sides of the treatment equation.

It seems clear to me that all of these threads: countering stigma, honoring vulnerability, and acknowledging human-ness are essential components of building a healthcare system that truly honors and integrates support for whole people (body, brain, relationships).

I think one area to start changing our expectations is in our training systems. We need systems where students who set healthy boundaries are respected, not judged. We need training systems where mistakes are treated as opportunities to learn, not moments of public shaming (or a rush to risk management). We need training that give us permission and tools to consider our work as part of an integrated system, not isolated silos of expertise.

And sometimes, we just need to pause, and honor the fact that being human is a process of learning and relearning, of connecting, of struggling–a process, not a destination.

Last year, I wrote a series of posts about the idea of healthy privilege and health stigma. My definitions of these concepts were based on the work of others before me, such as Peggy McIntosh and Kendall Clark. You are welcome to go back to the original posts and read them, but I’ll share the definitions again for you.

health stigma

The feelings of shame, isolation, self-blame and invisibility that many people facing physical or mental illness feel when others make assumptions or judgments about their ability, willpower, character, motivation, or work ethic (to name a few)–Ann Becker-Schutte’s personal & professional experiences

healthy privilege

1. A right, advantage, or immunity granted to or enjoyed by healthy persons beyond the common advantage of all others; an exemption in many particular cases from certain burdens or liabilities. b. A special advantage or benefit of healthy persons; explained by reference to divine dispensations, natural advantages, gifts of fortune, genetic endowments, social relations, etc.2. A privileged position; the possession of an advantage healthy persons enjoy over persons with illness.3. The special right or immunity attaching to healthy persons as a social relation; prerogative.

In addition to the formal definition, I would add this:Healthy people enjoy the privilege of bodies that work in the ways that they expect, free from regular pain or suffering, without extraordinary effort. Healthy privilege allows healthy people to assume that their experience is “normal,” and to be unaware that coping strategies that work for them will not work for someone dealing with illness.

If you’re familiar with the definitions, thanks for your patience in rereading them. I’ve been thinking about this issue again this week. These concepts have been on my mind again because I’m hearing things from my clients, and in the communities where I participate, the remind me that health stigma and healthy privilege still alive and kicking.

I wrote about another aspect of this issue a few weeks back, when I talked about shame and patient blaming in healthcare. And just last night, during a discussion on Twitter, a patient shared this experience:

@MedImprovePro: Cancer still stigmatized. BRCA+, but told by co-worker nurse ‘you wished that on yourself’.

I was floored. Absolutely stunned. How on earth is it possible that we still have people, let alone healthcare providers–who should damn well know better, who believe that cancer is something that we can “wish upon ourselves.” And why on earth would anyone make that choice?

I should know better than this. I hear my clients tell me about the shaming and blaming they face both in and out of doctors’ offices on a regular basis. I hear about the blatant discrimination against folks with all kinds of diagnoses, both physical and brain-based. I know this is out there.

But I believe that we can do better than this. So, if you’re reading this post, I hope you share it. And I hope that, as you share it, you look at one step you can take to educate others about health, health stigma, & healthy privilege. Because it is going to require all of us taking action to build and generate change.

A while back, I wrote a post about the fact that acknowledging our sadness is an important part of self-care. And that post seemed to resonate. Last night, during a #BCSM (Breast Cancer and Social Media) tweet chat about caregiving and breast cancer, the topic of anger came up several times.

One question that I saw in the conversation was how to handle when a patient or a caregiver gets angry. And I think this is critical. Because angry happens. And angry is an emotion that can have an important purpose when we’re emotionally healthy. Anger was intended to help us realize when something feels wrong, and have the energy to respond to it.

And certainly dealing with any serious illness means that something is wrong. Even if your treatment is going great, even if your chronic condition is well managed, you still have a level of awareness, restrictions and daily requirements that wouldn’t be present if your body was fully healthy. You’ve moved out of the realm of healthy privilege. Managing a serious illness is expensive, time-consuming, and often can make daily life feel like a huge challenge.

But sometimes, angry means that we are also feeling sad, frustrated, stuck, isolated, lonely, scared, or annoyed. Because anger is an active emotion, it can feel more comfortable than feelings that seem to be forced upon you.

That makes it incredibly important that you spend some quality time and sort out how you are really feeling, especially in a situation where you are a patient or a caregiver. Generally, no one signs up for a caregiver role unless you already have a deep and caring relationship with your patient, so I’m going to assume that these are relationships that matter to you. If you are feeling anger, it is great to take a few moments to yourself and determine the true cause of the anger. Do you really care that much about where the dirty dishes sit? Or is today a day that you are overwhelmed by your role? Because, to tell you the truth, neither the patient or the caregiver has it easy.

It can help to use a journal, or a therapist, or a safe friend to process your feelings. Once you feel like you understand the root of your upset, then you can sit with your patient or caregiver and talk it through. These are never easy conversations, but they matter a great deal. Reminding one another that you both care, and giving each other the compassionate benefit of the doubt during a tough conversation can go a long way. Being willing to talk through anger can help build a stronger foundation for the ongoing relationship.

Need some more ideas on healthy coping with anger? Well, it turns out that I wrote a post about that last year, which you can find right here.

And, of course, you can always share your suggestions for coping in the comments, or reach out to me directly for more support.

I’ve been in a bit of a theme recently with the worry posts, and I promise I’ll get back to that. Today’s post is completely off that track. It’s a reaction to things that I am hearing from my own clients and things that I am hearing from patient advocates online. I am hearing a lot about experiences of people feeling shamed and silenced in their healthcare experiences. This feels like a huge problem to me.

Some of our health is about our decisions. We can choose to eat healthy food, exercise regularly, participate in preventive care, manage our own diagnoses if we have them.

But not all of our health is about our decisions.

How many stories have you heard about folks who ate right, exercised, practiced prevention–and got cancer anyway? Or got rheumatoid arthritis anyway? Or experienced sudden coronary artery disease (SCAD) anyway? Because I’ve heard a lot of those stories.

The truth is, we still don’t understand all that much about how our bodies work. Yes, we understand so much more than we did fifty years ago. Or twenty years ago. Or ten years ago. But really, we are just scratching the surface of understanding what is going on in these complex systems we inhabit. We don’t know how much of health is genetic, or environmental, or decision based–not really.

We live in a culture that likes to have answers. We’re surrounded by promises that if we just use this product, or take that fitness class, we will be healthy and happy (oh, and probably thin, because we’re told that’s the only way to be healthy or happy).

Not only do we like answers, we like to have a sense of control. It is really frightening to think that you can make healthy choices, and still face serious illness. That’s not a reality that most people are comfortable with. It’s a little easier to blame serious health challenges on personal decisions. Truly, I’ve worked with folks who were told that their Type I diabetes (diagnosed before age six) was due to their dietary choices.

But not all of our health is about our decisions.

So, for a change this week, can we explore the idea that maybe health is more complicated than a single dimension? And can we look at the possibility that it is nearly impossible to shame someone into making good choices?

Can we offer compassion, connection and the kind of communication that really works toward change? Because that’s what I want in health care! How about you?

Many of my clients would not say that they have suffered from trauma. But many of them have faced serious health challenges. So, one of my early tasks in therapy is to help them explore how much trauma they may have experienced without knowing it. Here’s how Merriam-Webster’s dictionary defines trauma:

trau·ma
noun \ˈtrau̇-mə, ˈtrȯ-\: a very difficult or unpleasant experience that causes someone to have mental or emotional problems usually for a long time

medical : a serious injury to a person’s body

So, would you characterize an insulin crash as “very difficult or unpleasant”? What about cancer treatment? Or a stroke? Or chronic pain from rheumatoid arthritis?

These questions and the definition are the long way around to my point that health challenges are frequently traumatic. They include pain, disruption in life, and other major stresses. And surviving a traumatic event puts you at risk for developing post-traumatic triggers.

What’s a Post-Traumatic Trigger?

Good question. A post-traumatic trigger is something that creates a reminder or re-visiting of your initial traumatic experience. That means that nearly anything can be a trigger, because your brain created a unique set of associations with your initial trauma. Some frequently identified triggers are tests or scans, doctor’s appointments, the smell or sound of hospitals or hearing about someone else’s health challenges.

What Happens if I’m Triggered?

The experience of trauma and post-traumatic stresses is different from person to person. A few of the most common responses are freezing, flooding, or dissociating. These are only a few types of response, there are many other possibiliteis as well. Let’s look at the most common responses a bit more:

Freezing: When faced with a post-traumatic trigger, you may find yourself feeling unable to move, act or respond. This can include either physical or mental responses.

Flooding: Flooding includes an intense rush of physical and emotional sensations. If you don’t know that you have been triggered, you may feel completely taken off guard.

Dissociating: Dissociating is a fancy word for “completely disconnecting”. Most of us have some experiences of dissociation pretty regularly–have you ever gotten home and not remembered your drive? You were dissociated while you were driving. If you experience a post-traumatic trigger, you may dissociate (it happens automatically) and then find yourself “checking back in” without knowing what happened.

So Then What?

I don’t know about you, but many of my clients are initially relieved to have some labels that help their responses make sense. However, once the relief of being able to name and understand post-traumatic responses wears off, they also want tools to help with those responses.

There are lots of resources for coping with PTSD and post-traumatic triggers. Here are a few easy-to-learn strategies that you can begin right away:

Know what is happening. There is huge relief in being able to name the fact that you have had a traumatic experience and that you may experience future triggers. You’re not losing control. You are having a natural response to a painful event.

Use breathing to help ground you in your body and mind. Even 3-5 slow, deep breaths will help you move away from a triggered state and into a more comfortable relationship with your body.

Remind yourself that you are safe and out of immediate danger. Trauma responses are part of your body’s emergency protection system, and reminding your brain of your safety can help lower the response level.

Be aware that you probably won’t know all of your triggers–post-traumatic stress can sneak up on you. Be patient with yourself as you move through the cycle of identifying and responding to triggers.

Ask for help. Support groups and therapy can be good places to get additional coping support.

Have you been through this yourself? I’d love to hear your favorite strategy in the comments. And if you need help, you are always free to reach out to me.